Headaches / Migraines and Hypoglycaemia

[Sarah Grace]

I've was diagnosed celiac over 10 years ago when in mid 50s.  For a long time I have been getting headaches at night and in the morning and I suffer a lot of insomnia.  The headaches can be very severe and sometimes develop into a full migraine but other times they wear off within an hour of getting up and eating breakfast.  I have self diagnosed this a hypoglycaemia.  The medical profession in UK, where I live, does not seem to know anything of this and simply tests me for diabetes, which I do not have.  I know this condition is diet related and caused by carbohydrates, I avoid eating in the evenings.  Whatever I do, this condition seems to be getting worse and is very difficult to control.  Any advice would be much appreciated.

[trents]

Have you tried a diet with a lower carb, higher fat content, something similar to the Keto diet? Are you familiar with the ketogenic diet? Fat satisfies and so curbs hunger and levels out blood sugar.

[knitty kitty]

Welcome to the forum, @Sarah Grace,

I had symptoms like yours.  I thought at first it was hypoglycemia, but having type two diabetes, my blood glucose meter didn't register a low.  If anything, my blood glucose levels were slightly high, but quickly returned to normal with me stirring around after waking.  

I was certain dehydration, having similar symptoms, was not the cause.  A nurse advised me, a very long time ago, in order to stay well hydrated that one should drink a cup of water every time one visits the loo.  Drink sufficient water to have to make that visit about every two hours during the day.  The quick pinch test confirmed no dehydration.  If you pinch the skin on the back of your hand or arm, and the skin stays "tented" and takes a few seconds to return to normal, you're probably dehydrated.

My problem turned out to be high histamine levels.  Our bodies can make histamine.  Plants and other animals make histamine, too, and, so there's histamine in our food.  

Mast cells in our digestive tract make and release histamine as part of the autoimmune response in celiac disease, causing inflammation.  But, among doing other things, histamine is also a useful neurotransmitter.  Histamine levels increase in the brain in the morning, causing us to wake up.  High histamine levels can keep us awake, too, hence insomnia.  High histamine levels also can cause migraines.  

Intestinal Bacteria can also make histamine and release it, which can then be absorbed into our bloodstream.  High histamine levels can worsen gastrointestinal symptoms.  If you eat a diet high in carbohydrates, those carbohydrate-loving, histamine-producing bacteria can colonize the small intestine, resulting in Small Intestinal Bacterial Overgrowth (SIBO).  Following a Paleo Diet (a diet low in carbohydrates) starves out the SIBO bacteria.  

Eating a high carbohydrate diet can precipitate a Thiamine (Vitamin B1) deficiency disorder.  Thiamine is required to turn the carbohydrates into energy for the body. 

Having SIBO can indicate an insufficiency of Thiamine.  Thiamine has antibacterial and antiviral properties and helps keep bacteria in the gut within check.  Thiamine helps Mast Cells not release histamine.  Mast Cells that do not have sufficient Thiamine release histamine at the slightest provocation.  

Our bodies can break down histamine, if it has enough of the vitamins and minerals needed to make an enzyme, Diamine Oxidase (DAO).  Pyridoxine B6, copper, and Vitamin C are needed.  DAO supplements are available without prescription. 

Vitamin D helps lower and regulate inflammation in the body.  

Vitamins and minerals such as these can be at suboptimal levels.  Inflammation in the intestines can make absorbing essential nutrients like Thiamine difficult.  The eight B vitamins are water soluble and cannot be stored long, so we need to consume them every day in foods and supplements.  Thiamine can become low within three weeks.  

Supplementing with vitamins and minerals helps boost absorption so the body can function properly.  

Always check with your doctor and nutritionist before supplementing.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease, even if they've been gluten free for years.   

References:

Histamine Intolerance: Symptoms, Diagnosis, and Beyond

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11054089/

Dysbiosis and Migraine Headaches in Adults With Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9506300/

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9147846/

Mast Cells in Gastrointestinal Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/31807350/

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

Hope this helps!

[glucel]

hi knitty, I figured while reading the first few paragraphs of your post that thiamin would come into the conversation, haha. Anyway, I just had annual physical and asked for the b vitamins and others to be incl in the blood test. B12, folate, and b6 came back about mid range but they did not take enough blood to complete the b1 and b2. Are the good results for b12,folate, b6 a good indication that thiamin is ok or should I have another test?

[cristiana]

Hi @Sarah Grace

I'm a British coeliac too, and have had quite a number of different types of migraine.

***Are you under a gastroenterologist and receiving annual coeliac blood tests to test for compliance, and perhaps also for deficiencies?  If not, I think that is worth considering.  If gluten is still sneaking into your diet that could be the issue.***

That said, for me there was a huge improvement when I went gluten free, but I still get nauseating migraines from time to time, and a new type since going gluten free - aura migraines where I lose my central vision (the middle of my vision looks as if water is running down glass).  This tends to be triggered by small screens and close work.   

I know that in the past thirst was a massive trigger for me, and also low blood sugar.   Another contributor for me is tension in my neck caused by poor posture or cold weather, and certain light conditions, like low sun in the winter, can start one up. 

One other thought - have you looked into sleep apnea, which can cause migraines?  

But in any case, I think I'd be inclined to contact the Migraine Trust if you haven't already.  

https://migrainetrust.org/

Cristiana

 

Edited October 7 by cristiana

[knitty kitty]

10 hours ago, glucel said:

hi knitty, I figured while reading the first few paragraphs of your post that thiamin would come into the conversation, haha. Anyway, I just had annual physical and asked for the b vitamins and others to be incl in the blood test. B12, folate, and b6 came back about mid range but they did not take enough blood to complete the b1 and b2. Are the good results for b12,folate, b6 a good indication that thiamin is ok or should I have another test?

Not really.  Blood tests for vitamin deficiencies are not accurate. 

You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.  

Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).  

Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.  

I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.  

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.

Edited October 8 by knitty kitty
Typo correction, add p.s.

[glucel]

8 hours ago, knitty kitty said:

Not really.  Blood tests for vitamin deficiencies are not accurate. 

You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.  

Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).  

Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.  

I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.  

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.

OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.

[Sarah Grace]

Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post.

Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present!

I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂

[cristiana]

20 hours ago, knitty kitty said:

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

Good point, they should never have cut this from the syllabus.

 

Edited October 9 by cristiana